Salem & Raina With Their Friends

Salem and Maeghyn have been best friends since summer 04. I wasn't even pregnant with Raina then. As a mom, it's amazing to watch your children develop relationships outside of direct family and oh so very sweet. Now 4 years later Salem and Maeghyn are still best friends. LaRae and I hope it's that way forever. I think we are going to mandate it! :) I don't know what we'd do without the William's Family in our lives.

And look at Raina! She's 3 and Tristan and Justin are almost 2 but she plays well with both. They are SO precious together.

OK Julia I've decided - ya'll just have to leave the military and stay in Abilene. No transfers. EVER. :)

Oh and speaking of military that makes me miss Shannon and Tyler way off in Alabama and now I realize technically LaRae and John could move. :( I don't like this.

But I won't stress. We'll all be friends forever. Thank goodness for the Internet. How did people communicate before?

So a new week is upon us - so I have to clean my house. :)

Edited to add I can't get the pics to format right. Sorry.

Salem's Lunch Menu :(

OK #1 - it's cheap. It's included in her tuition this year and there is a lot of value to a hot meal for me. She tends to prefer a hot meal as well. But for a family who is trying to eat healthy and less processed food this is dismal. I am not as concerned for them with meat at school or when then are with others. We just won't serve it at home and let them decide about it when they are old enough to understand why.

So Salem and I talked and she has a couple of friends who bring lunches. So I am thinking of getting a bento box and send it with lunch and soup and let her eat at school on Friday for pizza. On pizza day they rotate dessert between cupcakes, rice krispie treats and M&M cookies.

Hopefully that will provide a good balance. And this isn't a slam against the school. I ADORE her school. I honestly think she'd have a similar selection almost anywhere she went here.

Our Week!

We have been a vegetarian household for 2 weeks tomorrow. :) No Diet Coke, no caffeine and no meat. I did eat tilapia at a girl's night and we will occasionally eat fish but to be honest I feel much better than I normally feel. No more immediate trips to the bathroom 15 minutes after I eat. I have more energy, less bloating...I just feel better. We went to a birthday party last night and I wasn't even tempted with cake and soda. :)

The rest of this week has been bland. It started off SO hectic with a MOPS meeting and somehow I have throw my back out. I have a massage on Tuesday and I hope that really helps. Brian got 3 ribs back in but it still really hurts.

Salem had a cardiologist appt on Tuesday and guess what? Dr. Fryer said he didn't see ANY signs of Hypertropic Cardiomyopathy!!!!!!!!!!!!!!

I am ecstatic. PRAISE GOD. He wants her to stay on the atenolol til she outgrows the dosage just in case and follow her in 6 months but she might be off the med in a year and then just go in yearly for a check up or if we have symptoms.

So do to this good news I brought up the growth hormones. I wasn't seriously considering them because of her heart - there is a chance that it causes the heart to thicken and that is basically what HCM is. But now that there is NO thickening and her heart is normal he said he wouldn't have a problem with it as her HCM has resolved and they would watch her and if there was thickening we'd revisit it.

So this doesn't mean we're for sure doing it but that it's an option again. She's going to be referred to an pediatric endocrinologist and then we'll go from there.

She then had a hearing test on Wednesday and that came back perfect. :) Then Friday morning in the middle of the night she started throwing up. It was disgusting and she didn't make it even close to the bathroom. She's never missed the toilet before. So I was up all night. So we emailed school and told them she wouldn't be there and then at 10 am when she woke up Friday she was totally fine. LOL.

So that's our week. My girls are taking a nap and we're going out tonight on a date. Whoo Hoo!!! :)

News From The Holamon House

The Stop the Violence Rally last weekend was amazing. Hundreds of people showed up despite last minute artist cancellations and the heat. Our speakers were SO brave. :) And we raised amazing funds for the Crime Victims Crisis Center.

So now it's over back to real life. LOL. Salem is loving school. She's having her pics taken today. Raina actually started the 2 hour 2x a week speech today at Woodson. She looked so little in the big' ole school. I am so proud of her. They said she jabbered a lot which is a blessing. She would hardly talk during speech this summer.

Salem has a cardiologist visit today. We'll talk about Growth Hormone but i am fairly certain it will not be done. I did fax her genetic testing to her geneticst. We're waiting for more information. Salem also has a hearing exam tomorrow. Some of the NS kids with articulation issues have hearing loss. I don't think Salem does but it's better to check it off our list. KWIM?

And guess what? The wonderful organization Five Humans has chosen Noonan Syndrome to be one of their causes!!!! YEAH! For those that haven't heard of Five Humans - their motto is Ignorance is a Curable Disease! They create hip fashionable clothing to help you support a cause. I am SO excited. Here is more.

Well that's it for today. It's the beginning of billing so I will be busy this week! And then we have the labor day holiday! I want to sleep late. :) We'll see if that happens.

And check out those labels I posted below. They are AWESOME!!!

Missing Lala

Salem really missed Larrah a lot yesterday. She wanted to tell her about school and was so upset. She doesn't understand how far College Station really is and when she said she wanted to go see her I said we couldn't today because it was too far and she just cried and cried. I felt so bad for her. Then she wanted to call her. I texted Larrah and she called later and Salem was happy! But it's been such an emotional roller coaster for her - 1st with Aunt Amy and the kids moving out and then Korie leaving after a short visit and then Larrah moving.

And I just went upstairs to see if the lights were out and the vents closed and it was SO empty. Now I really miss her. But she'll have a great life in College Station. I am just amazed that she's really gone.

Label Daddy - These are AWESOME!!!

These work SO much better than a sharpie or masking tape or the millions of other things I know I have tried. :) And they are cute. You can use them virtually on anything. Even on electronics, etc. Enter the code - westtxmom at checkout to receive 10% off.

Salem started Kindergarten today!

She was SO esited (how she says it :giggle ). I was worried cause last year most drop offs were sad but she did wonderful. She barely even said bye! :lol

Salem before we did her hair. Raina had to be in the pic.And Raina LOVES this dress. She has insisted on wearing it. It was one of Salem's first dressup outfits.

WOW. I can't believe she started school. I totally feel overwhelmed and sad but excited and happy for her. She was SO very excited.

Raina has been a little lonely for her. She's asked about her several times but she's having fun. I gave her a back massage with our vibrating massager. She LOVES it and the girls fight over it so we don't get it out a lot. We made homemade mini pizzas and had watermelon. We pick Salem up and then have our regular errands to run and Salem has gymnastics. :) And they both woke up at 6:30 with no problems. Brian made eggs and mini whole grain waffles.

Diet Coke Freedom

I have been diet coke free since Sunday morning!!! :) I still feel achy but my headache is gone at least. Poor Brian is trying to give up coffee and caffeine and is seriously jonesing poor guy. But we'll be better off.

We actually had a great food day.

Breakfast - fruit and english muffins
Lunch - A soup I made with vegetarian broth, sauteed onions and mushrooms, tofu shirtaki and seasonings. We had it with veggies on the side. The girls ate it too but they like mushrooms and the onion soup at Japanese Steak Houses so it was similar.
Dinner - Eggplant cutlets, whole grain pasta and marinara sauce.

For snacks Brian make a really good smoothie with almond milk, flax seed and peaches. So besides that our snacks today were pretzels, carrots and fruit.

Oh and the girls had Rice Dream ice cream tonight. :) That was a hit. The Almond Milk they didn't like but that's ok.

Mommy I don't Wear Underwear

OK We were shopping for school clothes and I mentioned we needed to buy underwear. Salem looked horrified. She said "mommy I do NOT wear underwear." Of course I was shocked and said what? I seriously had no idea where she was going.

Girls do not wear underwear - they wear panties - she clarified!!! LOL

Flexitarian Life Style

Flexitarianism is a semi-vegetarian diet involving the practice of eating mainly vegetarian food, but making occasional exceptions for social, pragmatic, cultural, or nutritional reasons. There is a wide range in the circumstances and outer boundaries of their dietary practices, which resist easy classification.

In 2003, the American Dialect Society voted flexitarian as the year's most useful word and defined it as "a vegetarian who occasionally eats meat".

That's going to be me and Brian. We have been reading a book and we really feel that our family is consuming far too much junk and animal fat. So we are going to concentrate on a mainly vegetarian menu at home occasionally adding fish in.

I am SO glad Brian is on board. It's hard to make changes when your spouse isn't on board. I've actually been leaning this way for over a year but was afraid to bring it up to Brian. I thought he would flip. But he is really open to it.

Wish us well.

We're Home!!!

We got home late Wednesday and Salem and Maeghyn rushed to gymnastics and I rushed to the post office and bank. We had a fantastic time. I'll update about the trip specifically soon. But it's been busy since we've been home. I've had a lot of work to catch up on then yesterday was Salem's K orientation and meet the teacher day! Then we had a party with friends celebrating her 4 friends fixing to go to Kindergarten! All 5 are going to different schools.

Today we had therapy and I am just now having time to breathe for a few minutes.

Tonight we're having a family date night! :) Tomorrow we're going school shopping with LaRae and Maeghyn and Sunday I clean.

And next week Salem starts Kindergarten.

So in the space of 2 weeks I have a 19 year old who moves 5 hours a way, a 18 year old who starts her freshman year at New Mexico State and an almost 6 year old start Kindergarten. WOW. It's going way too fast.

The Now I Lay Me Down To Sleep Foundation

I wish I had known of such a beautiful thing when Angel was born.

One day I'll see Angel again and these pictures I have - so sad and lonely the way they treated her - will be no longer remembered.

This is truly a beautiful service.

You've Got Me & Jesus

On my play list there is a song by Stellar Kart called "You've Got Me & Jesus". This is my prayer for my girls EVERYDAY!

When there's no where else to turn - All your bridges have been burned
Feels like you've hit rock bottom - Don't give up it's not the end
Open up your heart again - When you feel like no one understands
Where you are

Someone loves you - Even when you don't think so
Don't you know - You got me and Jesus
By your side - Through the fight
You will never be alone - On your own
You got me and Jesus

After all that we've been through - By now you know I've doubted too
But every time my head was in my hands - You said to me

Someone loves you - Even when you don't think so
Don't you know - You got me and Jesus
By your side - Through the fight
You will never be alone - On your own
You got me and Jesus

Hold on to what we got - This is worth any cost
So make the most of life that's borrowed
Love like there's no tomorrow

Someone loves you - Even when you don't think so
Don't you know - You got me and Jesus
By your side - Through the fight
You will never be alone - On your own
You got me and Jesus

Even when you don't think so - Don't know you
You got me and Jesus - By your side
Through the fight - You will never be alone
On your own - You got me and Jesus

You will never be alone
You got me and Jesus

Weekend News

We're going to the Ilano river with my friends LaRae, Deanna, A'Lisa and their kids. None of the dads are going. We're really excited. I bet it will be a blast - we're going tubing and plan just to sit and relax. Doesn't it look gorgeous? I am VERY excited.

Salem is disappointed cause she thinks this is a camping trip and she and Brian have been talking about going camping all summer. We need to have money for a tent and some gear first.




Brian and I got away Friday with the rest of the staff from the Mission! We went to Fort Phantom and Brian wake boarded (he and Ashley were the only successful ones at it and no I didn't trip). It was so nice and relaxing that Kelly (the boat owner) invited me and Brian and the girls out Sat. It was a blast. Salem LOVED it.

Brian grew up on a boat (his dad was a boat retailer). So now he has the bug to buy one but we really have no money. Maybe next year because it's amazingly relaxing! The pics of the girls are on the other camera. I will try to get them off later. They were really cute. Salem had a blast swimming and Kelly let her sit in his lap and drive. Raina was fairly antisocial with him as usual.

Today was Larrah's Farewell party. She's really gone. She's headed down to College Station right now. 5 hours away! :(

I want to know NOW!

OK all you who know me know I am VERY Type A. VERY. Brian and my girls certainly know. I really work hard at not being overbearing and controlling - but it is hard.

So...being the type A person that I am I want to know everything...NOW...

So imagine waiting "patiently" for Salem's blood work results...chromosome analysis, karotyping, blooding clotting tests and PTPN11 gene test. They came AFTER our appt with the geneticist on Tuesday. I went to get a copy today. I've started keeping a copy of her medical file at home. It makes it easy getting things to three different specialists (possibly 4).

I don't even get to the car before I start reading...

This GTG banded analysis shows a normal cell line and an abnormal cell line containing a supernumerary dot like marker chromosome of unknown origin. The marker was C band positive indicating it is composed at least partially of inactive heterochromalin; the presence of actively coding euchromatin cannot be excluded by cytogenetic analysis.,

Parental chromosome analysis is recommended to determine if the marker is familial or de novo. If familial, array CGH with a heavy concentration of SAC clones is the pericantromaric regions should be considered. Familial cases have been reported in which a parent carried a marker derived from a pericentromeric region; it has been excised from a chromosome and hence the parent was balanced. The child received the parent's normal chromosome and the marker and thus has the unbalanced karotype.

UM WHAT? Seriously - I am one of those obnoxious people that know a little about a lot of things. Sadly enough - genetics is not one of those things. I have no clue.

What I do know is that NS is caused by a mutation in a gene - different than a Chromosome (but I don't know how to explain that. So now to have this worry that there is an unbalanced karotype - ACK. Seriously...

So I call the geneticist. She's out to lunch. I call Sarah her assistant - she's out of town. More thank likely I won't reach them for at least at week. Our ped doesn't understand the results either.

So Monday before I leave to go camping with LaRae, A'Lisa, Deanna and the kids I am sure I will be burning up the phone lines trying to figure this out so I don't go mad.

I know the bible says cast all your cares on him - that includes your kids. But ohmygosh it's hard. I want to know NOW.

NOW.

UGH!

Bittersweet!

I think I forgot to mention it but the girls are successfully sleeping in their own beds! For about 10 days now. We let them sleep with us on the weekends. For history's sake - Salem slept with us from birth to 3 1/2. Then she decided she wanted a bed then a year ago was old enough to realize hey - Raina's in bed with you. So back in she came.

Recently we decided to try it. There was some tears at first but now Salem goes right to sleep. Salem doesn't like sleeping with Raina the way I had envisioned so she sleeps on the top bunk but Brian or I lay down with Raina til she falls asleep.

It's bittersweet - I LOVED cosleeping but I was ready and they are doing fine. They really aren't babies anymore. No more nursing, no more cosleeping and Salem starting Kindergarten!

Too fast...

Christian Oldie of the Week

My friend Shane and I used to be hard core Christian music fans in the mid-late 80's. We went to numerous concerts...ah those days were fun. So since he's been putting them online I thought I'd share one here occasionally! I LOVED Kenny Marks. I wonder what he's doing these days? I LOVE this song among many others.

Salem's Geneticist Appointment Update

Funny store before the serious...we walked in and said hi, she did all her stuff and then showed Salem this booklet and a girl that looks just like Salem. She wanted Salem to see that there are other kids in the world that looked liked her. Funny note - it was the booklet Salem did last year in Miami. Salem goes hey that's me. The look on the geneticists face was priceless. She recovered quickly and made sure to make a big deal about it throughout the office.

Serious - she looks good - nothing serious noted except her growth is kinda stalling. She's fallen off her NS growth curve quite a bit and if she stays at this rate of growth she surely won't be 4"11". More than likely 4'5 or so.

So she wants me to think about growth hormones afterall and talk to her cardiologist. She wants the referral to come through him as he will have to watch her heart more often. Then we would have to go to Cook's Hospital for the initial endocrinologist appt and then we'd be followed at the satellite clinic here.

Garbage In Garbage Out

Spiritually this is true. If you fill your mind with the garbage of this world - you're spirit will be full of junk. Out of the abundance of the heart the mouth speaks. It's very clear biblically.

But can we apply this principle to our physical body? Seriously what are we eating? Cancer is at an all time high, learning disabilities, autism, alzheimers, diabetes...what are we eating? What are we doing to ourselves? As a woman who has diabetes I know I can control it by watching what I eat. Before I got pregnant with Raina I had lost 60 pounds. I ate a lot of veggies and lean cuts of meat. But seriously is that enough?

Without sounding like a scaredy cat - I think it's more than that. What about pesticides and hormones and other crap put in our food? It's why we eat very little red meat and only organic dairy. I think the more chemicals and additives that are in our foods the better they taste or the more easy they are to prepare. It's actually all about making it marketable and in quantity (growth hormones in milk, beef etc). Seriously as a consumer I am shocked about how little I know about the products I buy and consume. I think manufactures think we are dumb.

I know a lot of people these days who are trying to eat healthier. And we do as well but it's hard. It costs an arm and a leg to eat healthy wholesome food as opposed to junk. Junk is cheap. It's mass marketed. And with gas so high I find that I automatically want to find ways to save on my ridiculous grocery bill

I am 40 and I am overweight and have diabetes. Just this year I have lost a friend to lung cancer, had another friend develop breast cancer and had a 35 year old friend have a heart attach. I have to get exercising and eating better for my own health as well as that of my kids.

Think about what you eat. Is it garbage in garbage out?

Grace & Mercy

Funny story - Brian has been teaching Salem the concept of Grace and Mercy and what Jesus did for us on the Christ. So he told her one day - Salem I am going to show you grace and mercy this time and gave her a second chance. A bit later she disobeyed again and was about to be disciplined and she was going daddy please wait please wait - I need to ask you something really important. Daddy please wait.

This is normally a stalling tactic of course but Brian said what is it honey...she said - would you show me grace and mercy please?

Omgosh how sweet! But what a fine line we walk. God shows us sinners an amazing amount of grace and mercy. While we were sinners he died for us. He loves us unconditionally the way a mother loves her child and always will even when that child makes mistakes and needs to be disciplined. But in those moments I imagine God's heart cracks a little and wants to take all the discipline away because in that moment listening from the other room I wanted her not to be in trouble. It was such sweet sounding words of contrition. I listed to Brian gently explain that he loved her so much but sometimes discipline is necessary even when we are sorry. Consequences happen. So of course she wept. They talked more and when it was done they hugged and it was SO sweet.

Lord - thank you for your grace and mercy. Remind me how to love my children unconditionally the way you love me. Let me be an example to my child - these children you blessed us with - of your love.

My goal this week is to daily show God's love, his grace and his mercy...to my husband, my children, my family and those I don't know.

Eventful Weekend!!!

Our weekend started Thursday (kinda) with the adoption/rescue of two kittens. They are Siamese mix and SO precious. Raina and Salem naturally "picked one" and it's funny that the cat they picked - well their personalities are pretty in sync with the cats. Salem SO wanted to name her kitten Anabella and really that is SUCH a cute name and she came up with it all by herself but "she is a he" so she finally decided on Troy! :) As in High School Musical's favorite heart throb. Raina's is Lily - mainly because she says Lily instead of Kitty and it's SO SO SO cute. I kinda tried to get Salem to choose Jonas but she was set on Troy! Here is a REALLY bad picture of the girls with the kittens. My camera was on the wrong setting.

Friday we spent a good portion of the day at The jump Around. The girls were really well behaved and Raina tolerated Salem's therapy (an hour at Rehab) really well. I was worried cause she had totally flipped out earlier in the week. They loved it. We stayed for a good three hours and LaRae took this pic! Isn't it precious? I LOVE that has much as my girls fight they love each other. I tell them everyday that they are God given best friends.

Friday night we just rested and ate - a thunder storm blew in and it was a tad scary even for me. Sat was a fun day at the Zoo. They had TONS of activities and we went with friends. They got to pet 2 snakes and a hedge hog. Salem pet a Brazilian Rainbow Cobra. BLECH! I didn't like it AT ALL. But Salem said - mommy touch and of course I had to even though I hated it. I didn't want to teach her to be afraid. Our friends joined us at the house afterwards for food and swimming. It was nice.

Later in the evening the girls slept and we watched The Bucket List. What an amazing story line. Check it out. It's worth it - but definitely a tear jerker. Brian even liked it. It was nice to have a laid back family weekend. We've really needed it. Today was church and here I sit. I should clean. But today is the sabbath - can I use that as an excuse?

So this next week I'll be preparing to go camping the next week on the Llano River with LaRae and her kids and 2 of our girlfriends and kids. I am VERY excited. None of our husbands are coming. It's only 3 hours away. And Salem starts gymnastics on Wed. I might put Raina in. We'll see. They have a different class for 3 year olds.

So I probably shouldn't use the sabbath excuse and better get up and clean!